Monday, November 15, 2010

Chronic Pancreatitis: A Terminal Illness

Life with a terminal illnessYesterday, I was reading up on pancreatitis. You can never learn enough about it especially when so little is known about it.

One made reference to her disease as being terminal. Although I know it to be true I suppose I've never put it in those terms before. I use gentler working like 'you need to be careful because every attack takes years off your life.'
She's right, you know. The disease is terminal. It's like life. Life is terminal. You know from the get-go that no matter what you do you are going to die. Chronic Pancreatitis is the same. As with life, how you treat your body in many ways determines how long you will live.

For example, my personal goal is to live 20 years from the time I was diagnosed (March 26, 2008). But, if I drink tomorrow (or today for that matter) my life would end immediately. On the other hand, if I eat appropriately, exercise, remain relatively stress-free, etc than my hope is to survive long enough for a cure to be found. With how inept the medical field is regarding their progress toward finding a cure there is a good chance it'll take many years before a cure is found... or even reasonable rates of prolonged life.

For some reason, I felt joy and happiness toward life - my life - when I realized my disease is terminal. Not like I want to die but rather I want to live, live happily and to the fullest. Yes, this is how I try to approach life in general but the awakening that my days are numbered really reminded me how precious life is and how lucky I have it!


  1. My eldest son was recently diagnosed with chronic pancreatitis and all i know is i believe in Gods healing power, so i say dont tell God how big your problem is tell your problem how big your God is !!!!

  2. Hi Leah - My heart goes out to your son and what he's going through. There is a story that goes like this... There was a man on top of a mountain that was burning all around him. He needed to get off the mountain or he would surely be burned alive. He prayed to God, "Please God, help me!". A helicopter came shortly after and tried to give the man a lift off the mountain but the man declined stating that he was waiting for God. After the man passed on he asked God why God did not help him. God said, "I sent you a helicopter what more did you want?".

    Somehow, I doubt God could give a flying f* about my pancreatitis. If there is a God, then God brought pancreatitis onto this world so probably couldn't care less whether or not your son or I have it.

    That being said, there are tons of things we can do to live longer, healthier and fuller lives. If you like, you could say that God gave us these things for us to take advantage of if we so please... hence free will.

    Inaction is a foolish decision when it comes to chronic pancreatitis. Expecting God to take care of it sounds more like a disguise for procrastination. Again, God would already know how big the problem is and, perhaps, with God's help we're given tools to help us live longer, happier and fullier lives even though there might not be a cure for this disease.

    If your son is drinking and wishes to keep living he'll probably want to put down the drink and he might very well want to ask God to help him with that (and perhaps a recovery center) and then remind your son that God knows how big his problem is and that God is there to help him and will!

    My you and your son be blessed with love and wonderful things!

  3. My 18-year-old son is in the hospital with acute pancreatitis caused by binge drinking. He's refusing any kind of a treatment program, and says that he'll just go to an AA meeting. I know I can't trust him to do this, and I think he really needs residential treatment for his alcoholism.

    However, from everything I'm reading, it sounds as though stress and the wrong kinds of food are possibly as dangerous as alcohol in the early stages of recovery. Should I have him come home for a few weeks and then press him on the treatment program? Or should he go directly into rehab? I don't think he'll start drinking right away again, but his drinking friends are already visiting at the hospital, bringing him cigarettes and Doritos. Their influence is what really has me worried. Any advice about this will be greatly appreciated!

  4. Good grief woman, get him into recovery asap.Check your health insurance to see if he can go to rehab in a hospital so that they can be treating the pancreatitis along with the drinking problem. He could die if not getting the right treatment. I don't think he understands how serious this really is. May God lead you to the right people to get him well.

  5. Hi Melissa,

    I'm so sorry you are going through this. I hope your son is beginning to feel better and not drinking. It can be very difficult for teenagers to realize they are invincible. And, as a mom of a teen, I know firsthand how listening to mom is often far from their agenda.

    That being said, many people stop drinking without rehab programs and it is said that AA works for many people. I believe the desire to stop drinking is needed. Perhaps rehab works for some but it also has a high failure rate. AA meetings are a place where your son can meet with others who are experiencing the same problems with drinking... but NOT drinking anymore. I bet AA has a lot of meetings for Young People. Your son might be able to relate to them and hang out with them while he's learning how to live life without alcohol. It will also allow him to see how others are staying sober one day at a time.

    I know you want to fix this for him and you must be out of your mind with concern. My heart goes out to you and I know your pain. If your son wants to go to meetings then that is fantastic, absolutely fantastic. It is said that AA has a design for living a sober life. People can find drugs and alcohol in rehab if they really want it. They can also stay sober in the rooms of Alcoholic Anonymous if they want it.

    Does he understand the ramifications of acute pancreatitis? Some people recover from it completely and it does not turn into chronic pancreatitis as it has for me. Your son might be one of those people! It doesn't mean he should resume drinking necessarily but from my understanding chronic pancreatitis is a death sentence. So, if he doesn't have it then perhaps this experience can be more of a warning for him where he can realize that for him alcohol is not an option because he can die from it, AA meetings are a great place to learn to stay sober one day at a time and that if he doesn't drink again he will have a good chance of living a normal life.

  6. (cont.) About food. I'm assuming a nutritionalist spoke with you and your son at the hospital and that you are dealing with that now? And while it is not my place to tell another what to do I would personally want my child to return home and stay with me during this time of recovery. For one, it's a really hard time to get through for the sufferer so helping him will help keep him from getting even more depressed. Your body hurts so bad and you feel like you are going to die and there is no hope at first when you can't eat and you can't function normally that having you there for him to help with food and to be a support could really be a huge support. He'll need it even if he doesn't think so or say so.

    Chances are he won't be able to eat normally for a while (for me, I'll never be able to eat normally again). Don't worry if he loses weight. Don't try to overfeed him. If he can't eat, that's okay. Chicken broth is good in the beginning. When he's ready for a little tapioca or jello then that's good too. Even if he's thin and stays thin for a while just bear with it. Know that his pancreas will heal faster with less food so skinny for now will lead to more weight sooner... believe it or not. Patience is essential. Also, his stomach has probably shrunk already so he's probably not going through the heavy hunger pains anymore. Take it easy. Take it slow. Real slow. Keep it bland. Toast with jelly. An English Muffin for variety. A tortilla... plain. Cultured Yogurt (like 6oz).

    It was really hard for me to believe I couldn't eat like I like to, when I first went back to food. But eventually though trial and error I began to figure it out. Just don't try to fatten him up. If he eats something that hurts him and sets him back then, for me, those sometimes I'd have to go back to liquids for a few days until my pancreas felt better. Yes, even if that meant I'd lose more weight... even if I was already too thin. Thin is better than dead and the pancreas can be more foe than friend at times so it's best to be very careful when dealing with it.

    I'm not a doctor. I can only share my experience, strength and hope. No booze and bland food, or bland liquids.

    Again, I'm so sorry this is happening to your son. If he is still in the hospital then you might ask if there are AA meeting at the hospital. I'd guess most hospitals have them at least once a day. He's probably out since its been a few months. Please do let us know how things are going. I send good wishes to you and your son!

  7. Hi, I am currently going through my second pancreatitis attack. The first was about 4months ago. I now have diabetes since that first attack, and have no clue of what to eat. I can't eat anything, because of the pancreatitis, diabetes, and also some liver problems. I felt so dehydrated and drove all the way to tijuana just to have some fresh tender coconut juice and pulp. This helps alot don't know why though. God help us!

  8. I myself am glad i found your blog. Will be reading it alot. I just got out of the hospital because of acute pancrtitis. This is my 2nd time in the hospital. It sucks. Doing all i can do to change my life.

  9. I'm glad that I've finally found someone to talk to about all of this. I was diagnosed with chronic pancreatitis 14 years ago. I went thru 3 really bad years, and then all the pain just went away. That is until about a year and a half ago. Now they say that it has calcified to the point that it has to be removed. Oh, and get this, I'm only 35. I am now totally off of solid food, and am stuck with those nasty Ensure drinks. The funny thing is that I used to like the taste of them. With everything that you have to look forward to, I would just like to say that I'm sorry. It is really nice to have someone to talk to about it though. My best wishes and prayers........Daniel

    1. Hi Daniel,
      I'm so sorry you are going through what you are going through right now. I am also very grateful that you are sharing your experience with us. I really don't know much at all about a calcified pancreas. Do you? I'm not even sure if how much the medical community knows about it. To me it seems to be something like petrified wood - except happening to the pancreas. I'd like to know if any studies have been done to find out if there is any reversal to the calcification. If that is possible? It doesn't seem like it would be but wouldn't it be a wonderful option. So, can' you live without your pancreas? Will the entire pancreas be removed? Have they said what life will be like after the removal? Again, is a partial removal of the pancreas or the entire pancreas? Do they know what increases risk of calcification of the pancreas?

      I've heard that there comes a point when it chronic pancreatitis does not hurt anymore - not that it goes away, just that the pain is gone.

      Are you trying any holistic remedies? Foods? Herbs?

      My best wishes and prayers to you, too! Please continue to update us. Your experience can help us all to understand the disease.



  10. from as far as i can remember i have always suffered from abdominal pain, but the doctors mis-diagnosed my illness for years.. i was finally diagnosed with chronic pancreatitus when i turned seventeen cause i passed out cause the pain was so severe.. i have been in and out of hospital ever since. i am now twenty four and my attacks are becoming more and more frequent, the pain is unbearable, it feels like hundreds of cigerettes are being stubbed out on your insides.. and the meds make you feel like a zombie :/ this illness gets worse and worse with time so the future is uncertain, which is quiet scary to be honest.. it kinda feels like your driving a car but the brakes and steering has failed and you just have to go with it lol but i try to stay positive and try live my life to the fullest! enjoy the time you got! and spend time with the ones you love :) cause you never know when your times up.. godbless -luke

  11. My sister passed away with chronic pancreatitis. We had to wait for the autopsy to find out. she had been in and out of the hospitals for years...treating the symptoms, but never telling her a diagnosis. she was uninsured due to her health, and losing her job. We are now going to request her medical files, because I really dont' believe she ever knew. She did drink and didn't take care of herself, but I don't think she would have continued drinking if she knew that was what was causing the pain, sickness? Healthcare and hospitals are ridiculous. If you have unemployed and have children, you can get help, but if you work for 20 years, and are unemployed due to you one helps. So sad! goodluck to all of you.

  12. The first time I had pancreatitis I was in 1986 ( yes I was very young child!) I am now 38 years old. I had touble yearly till 1994 and all was well till 2004 when I had another one. went a few years then pancreatitis yet again. In May 2010 I needed to be admitted into the hospital my liver was failing. I had being admitted into the hosp when I have pancreatitis I rather deal with it at home with pain med. Since May 2010 I have had several pancreatitis, and now dx as chronic pancreatitis. I am otherwise Healthy work full time, (Go to work even when Sick). It has not killed me yet.. My MRI show more damage from 2010 to now. from all the ones I have in between. It sucks but learn to live with it.

  13. Hi all, I am 48 yrs old and had my first attack of acute pancreatitis in 1988 and was told it was from drinking, however I never stopped being stupid and in 1990 they took my Gall Badder out (big cut back then)This helped for about 5 years and then I was told in 1996 I had Chronic Pancreatitis. As I am a small man to start with the treatment from doctors and hospitals is a disgrace, that I am now taking one to court for telling me to leave the hospital by nursing staff as the doctor refused to see me as he accused my of drug seeking! As you all know they pain is so bad its hard to put into words. I to was told there not much time left for me BUT HERE'S THE GOOD NEWS!!! I found a Surgeon in Melbourne who does Nerve Blocks (45 min op)This stops the need for narcotic meds then withdrawals. So with creon I can eat normal and are pain free and stop drinking. So I hope this helps.

  14. It is a blessing to have found others suffering like myself. Im drinking some ginger tea thanks guys :) im 27 in Canada I just had my first round with pancreaitus im not looking forward to round 2 I know its right around the corner I am never touching alcohol again, mind you I was never a big drinker, this first attack almost killed me I passed out, then didn't go to the hospital for 16 days the were pumping me with fluids and pain killers. I didn't mind the pain killers to be honest but in Canada they took my license because I passed out 2 more times after they released me from the hospital, bullshit if u ask me. well good luck to everyone ill be on here giving updates I lost 50 lbs in a month :(

  15. I have had symptoms of chronic pancreatitis for almost 4 years. I am a type 2 insulin dependent diabetic. Blood sugars are almost always very high. Ithink the doctors all look at me like i am hypocondriac. I am in pain almost all the time. especially after eating. I am in pain today and feeling nauseous. I cannot get anyone to take my illness serious. Kitty

  16. Hi thank you for all our comments it has given me a much greater perspective on this disease and a better way of looking at it God bless